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No matter the cancer site or type of treatment, negative outcomes are disproportionately prevalent in underserved communities. For instance, a recent report finds that in the Appalachian Region, cancer mortality rates are 10 percent higher than the national rate, and the cancer mortality rate in that region is 15 percent higher in rural counties than in metro counties.1

ACCCBuzz talked with Nadine J. Barrett, PhD, MA, MS, the Director of OHED and one of the architects of the five-step roadmap, about the importance of community collaboration and vital measures any cancer program can take to address the prevalence of negative outcomes in minority communities.

ACCCBuzz: What is the importance of community collaboration in addressing health disparities and health equity in cancer care?

Nadine J. Barrett, PhD, MA, MS: The community plays a critical part in cancer care across the spectrum—from education and screening to survivorship. The relationships between the community and health systems are critical in terms of access to care and the barriers that may prohibit some from fully accessing services. Collaborating and engaging with our community partners lets us find what innovative programs and services can be developed or enhanced to improve access to care within in the context of our cancer centers, no matter how small or large.

Typically, we come with this top-down approach with our community and patients, where what’s of value to them—their decision making, their thoughts, their ideas—wasn’t being captured. If we don’t create opportunities to learn from each other and work together toward a solution, then we’re fighting an uphill battle.

ACCCBuzz: So community collaboration is essential to delivering truly patient-centered care?

Dr. Barrett: Absolutely. Focusing on health equity and disparities also helps us to understand and appreciate the social and historical relationship that diverse populations have with their community cancer centers and health systems. If a patient in the community doesn’t trust the health system or believe that the health system is only advocating on behalf of their own needs and interests, those perceptions will affect how they talk about cancer screening and diagnosis with their families, friends, and loved ones – ultimately impacting the perceptions and screening behaviors of their family, friends and the broader community. Collaborating with trusted members and organizations with the community is critical to changing this narrative through authentic collaborations and communications.

ACCCBuzz: Why do you think community-based and academic cancer programs make a good partnership in addressing health disparities?

Dr. Barrett: We asked one of our community health centers what our partnership should look like. It was clear to us that there were resources and expertise they had with a given community, and there were resources and expertise we had with degrees of care. The closer we work together and align our priorities, the more we can leverage our expertise toward addressing the needs in their community.

For example, with the Commission on Cancer, when we do community health assessments, we can work together to understand a community’s cancer care needs and implement strategies and research to address them. Large academic centers are able to capture and analyze data. Why not leverage our respective strengths to capture that data? The second part of that is thinking about research, how we can engage our community and patients in research and clinical trials. These collaborations allow us to meet several needs simultaneously. We are able to identify and meet patient and community needs, organizational accreditation, and institutional needs. A win-win for all.

Watch this video to learn more about the Duke OHED comprehensive program for community engagement.

ACCCBuzz: What can other cancer care programs take away from your work at Duke, in terms of improving health equity and disparity?

Dr. Barrett: With our comprehensive program, any and all parts can be modified to suit the size, needs, and capacity of community cancer program structures. For example:

Creating a community advisory council goes such a long way in addressing health disparities. Working together to identify needs, learn from each other, and gain insight into the challenges and opportunities to improve community health in cancer, and to make the appropriate linkages and support programs to address them. A partnership with a community advisory council can go miles in advancing health equity.

From there, you have to figure out how to conduct needs assessments in such a way that the patients, community, and organization’s needs are met, based on aligned priorities. You then can use the assessment as a blueprint to address needs regardless of the size of the organization.

The third area is creating sustainable programs, services, and research opportunities that reflect the outcomes from the assessment findings.

All of these components need to be explored and modified based on the individual structure of local cancer programs.

Dr. Barrett: One of the things I’m most excited about sharing is how empowering this experience is. It’s so rewarding to know that the work we are doing is reaching such a diverse population—black, white, Latino, Asian, LGBTQ, Muslim, poor. There’s a generational difference now, too. We have young people advocating at the college level. It’s like we are in the midst of a community culture shift; we are building together across the spectrum of age, race, and ethnicity.etc. to advance health equity in cancer services.

On August 15, 2017, Dr. Barrett was appointed to the Patient-Centered Outcome Research Institute (PCORI) Advisory Panel on Addressing Disparities.

Meet Dr. Barrett and hear more about the Duke Cancer Institute’s five-step process for implementing a health disparities and equity Health Disparities & Equity Program at the 34th ACCC National Oncology Conference in Nashville, Oct. 18-20.